mattie
Senior Member
- Messages
- 375
Severe insomnia since ME onset 2 years ago.
I have been taking Klonopin for sleep now for about 6 months.
0,8 - 1 mg (liquid form called Rivotril) Never increased above 1mg.
It worked well in the first few months. Gave me about 6 hours reasonable sleep. Definitely not enough but a lot better than before.
This got less and less. For the last couple of months it's been more like 3-4 hours of sleep.
Also getting interdose withdrawal symptoms during the day.
This ongoing lack of sleep has made me so much worse.
Currently completely bedbound and after another bad night I barely have the energy to breathe.
I do not want to increase my dosage as I know all too well about the risks, especially if you keep upping the dose. But tapering down is not really an option either because if my sleep will get any worse I am afraid I will not survive for much longer.
Tried all the other stuff. None of it helped.
Other shorter acting benzo's are even worse than Klonopin. I got tolerance on them in just 2 weeks.
same for Ambien (Zolpidem). That stuff also gave me horrible interdose withdrawal.
Had a sleep study done: result: almost no deep sleep.
They put me on Amytriptyline. Did not work. Horrible side effects.
Later tried Trazodone: Did not work either. Again horrible side effects.
Melatonin: No results
Natural stuff does nothing: eg: Valerian, L-Theanine, Gaba, 5HTP, etc. Tried all the supplements ever suggested for sleep on this forum.
Cannabis: cannot tolerate it. Does not help.
Diet: tried them all. I eat like a monk. And no: Bone-broth is not an option.
Sleep hygiene: Been there, done that.
Meditation / MBSR / Relaxation: check.
Sleep or no sleep for me is the difference between being totally bedridden and having a tiny little bit of a life.
I slept like a baby for 43 years. Now virtually every night is pure torture. (daytime too)
This disease is living hell.
I have severe ME and POTS and my health is declining so rapidly it is frightening.
My GP can't help. And the last ME "specialist" I saw did not live up to the Primum non nocere oath.
So running out of options here...
Must sleep.![Nervous :nervous: :nervous:](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
I have been taking Klonopin for sleep now for about 6 months.
0,8 - 1 mg (liquid form called Rivotril) Never increased above 1mg.
It worked well in the first few months. Gave me about 6 hours reasonable sleep. Definitely not enough but a lot better than before.
This got less and less. For the last couple of months it's been more like 3-4 hours of sleep.
Also getting interdose withdrawal symptoms during the day.
This ongoing lack of sleep has made me so much worse.
Currently completely bedbound and after another bad night I barely have the energy to breathe.
I do not want to increase my dosage as I know all too well about the risks, especially if you keep upping the dose. But tapering down is not really an option either because if my sleep will get any worse I am afraid I will not survive for much longer.
Tried all the other stuff. None of it helped.
Other shorter acting benzo's are even worse than Klonopin. I got tolerance on them in just 2 weeks.
same for Ambien (Zolpidem). That stuff also gave me horrible interdose withdrawal.
Had a sleep study done: result: almost no deep sleep.
They put me on Amytriptyline. Did not work. Horrible side effects.
Later tried Trazodone: Did not work either. Again horrible side effects.
Melatonin: No results
Natural stuff does nothing: eg: Valerian, L-Theanine, Gaba, 5HTP, etc. Tried all the supplements ever suggested for sleep on this forum.
Cannabis: cannot tolerate it. Does not help.
Diet: tried them all. I eat like a monk. And no: Bone-broth is not an option.
Sleep hygiene: Been there, done that.
Meditation / MBSR / Relaxation: check.
Sleep or no sleep for me is the difference between being totally bedridden and having a tiny little bit of a life.
I slept like a baby for 43 years. Now virtually every night is pure torture. (daytime too)
This disease is living hell.
I have severe ME and POTS and my health is declining so rapidly it is frightening.
My GP can't help. And the last ME "specialist" I saw did not live up to the Primum non nocere oath.
So running out of options here...
Must sleep.
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